Where There’s a Will, There’s a Way

The Will Herndon Fund for Juvenile Batten Disease Research

We have partnered with the Beyond Batten Disease Foundation to find a cure for Juvenile Batten Disease. With your HELP, we will provide HOPE to Will and the hundreds of children like him.

Four years ago, Will Herndon and his family received a devastating diagnosis. Will, a loving, bright, energetic six year old had juvenile Batten disease- a rare, genetic, neurodegenerative disorder. Batten attacks an otherwise healthy child beginning with vision loss, declined cognitive skills, and seizures.  Progessively, children suffer loss of memory and speech until they are mentally and physically incapacitated, eventually leaving them wheel-chair bound, then bedridden. With no current treatment or cure, Batten disease is always fatal, often by the late teens or early twenties.

This prognosis is cruel and unacceptable.  In 2009, The Herndon Family joined forces with Beyond Batten Disease Foundation and created The Will Herndon Fund for Juvenile Batten Disease Research. Together, they have worked to bring the best and brightest in the medical community together to fight this disease.

Around the greater Houston area and beyond, The Will Herndon Fund has worked tirelessly to raise awareness and funds to accelerate the research to find a cure. The scientific team charged with this task works within the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital in Houston. This team has made tremendous advances since its inception just a few years ago. In 2012, they discovered potential drug candidates that may be able to slow the progression of the disease. These promising discoveries require funding for a clinical trial.

Our goal is to SAVE WILL and the hundreds of other children stricken with juvenile Batten disease. We have HOPE, but we need your help.




Upcoming Events

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HOPE on the Green

Apr 11, 2016Register »
Remembering Zachary Killinger
HOPE Under the Stars

Sept 10, 2016More info »
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